BERITA HOSPIS - Hospis Malaysia

CELEBRATING 25 YEARS OF PALLIATIVE CARE IN MALAYSIA
KDN PP8369/10/2012(031505)
BERITA HOSPIS
1st ISSUE 2016
PALLIATIVE CARE: BEYOND DEFINITION TO OUTCOME
By Dr Ednin Hamzah, CEO, Hospis Malaysia
T
Fast forward to 2016, and palliative care is available in
some government hospitals, communities and taught
in some universities. We have a National Adviser for
palliative care at the Ministry of Health, most of the
essential drugs for pain and symptom control are
available, a few doctors are recognised as specialists
in the Ministry of Health and Malaysia sponsored a
palliative care resolution at the World Health Assembly.
Over the past 25 years or so since palliative care
was introduced to the country, some patients have
received good palliative care but many have not. In
that time, many have been diagnosed with cancer
and other debilitating illness and suffered from pain
and other symptoms. People have died, children have
grown older and a younger social media dependant
generation has been fostered on society.
IN THIS ISSUE
Due to the lifestyles we have chosen and for other
reasons, many in our society are at risk of being
diagnosed with a debilitating disease in 2016. So what
if you or your loved one needs palliative care today?
EDITORIAL NOTE
Palliative Care:
Beyond Definition to Outcome NEWS
Hospis Malaysia Announces New Medical
Director PALLIATIVE CARE NOTES
Why is Palliative Care Research Needed? THANK YOU
1
2
3
4
PHOTO CREDIT: SC SHEKAR
he origins of palliative care in Malaysia dates from
the early 90’s when the first formal palliative care
services started in Kuala Lumpur and Penang.
Since then, much has taken place and as a society, we
can take some solace in that palliative care has taken
root in our healthcare systems.
If I need palliative care tomorrow, will the ones responsible for
my care act in my best interest
Our media typically brings out articles on what
palliative care is (mostly at a superficial level). The
Ministry of Health may inform us about the number
of doctors, location of services and drugs available in
connection to palliative care. Is this sufficient to guide
us when care is needed?
For a baby born today, within 25 years, he or she
would have matured and hopefully have graduated
and entered the workforce. In the 25 years or so that
palliative care was ‘born’ in Malaysia, has this area of
care matured?
ADVOCACY
Moving Forward – Serving The Palliative
Care Needs of The Nation Sustainable Development Goals
6
9
EDUCATION
The Need for Palliative Care Training
7
Hospis Malaysia’s Palliative Care Nurse Emily
Yap joins teaching faculty for Lien
Collaborative Programme in Sri Lanka
8
FEATURE
Don’t tell patients what they could be
doing to cure themselves
11
UPCOMING EVENTS & UPDATES
National Palliative Care Awareness Week 5
Calendar of Events
12
Caregivers Workshops 2016
12
Newsletter Feedback Survey 12
continued from page 1
Are we responsible for the care that we receive? If
we are, what should we do about it? If we take the
big brother stance, then the government should act
in our interest. Palliative Care is the most important
healthcare issue that affects us when a loved one is
suffering. There are some questions that we should
start addressing now.
So, if I need palliative care tomorrow:
●●
Will the doctor that sees me be competent in
understanding me, my care preferences and
relieve my suffering?
●●
Will the nurse and other health care workers
that I see, respect me as a person and not
simply as a disease?
●●
Will the doctor and palliative care workers be
able to negotiate my goals of care with me
and my loved ones and provide me with all
the information I need?
●●
If I chose to stay home, will my suffering be
attended to and be relieved?
The World Health Organisation’s resolution on
‘Strengthening of palliative care as a component of
comprehensive care throughout the life course’ calls for
participating countries to integrate palliative care into
their national health systems.
After 25 years of palliative care in the country, it would
be good if Malaysians were informed about what care
they could expect today and the months and years to
come, wherever they reside in the country, in hospitals
and at home.
For adults and children with life limiting illness and
their caregivers, just knowing what palliative care is,
is not enough. They need to know that their pain and
suffering will be relieved, psychological, social and
spiritual needs be addressed and that help is at hand
wherever they are.
HOSPIS MALAYSIA ANNOUNCES NEW MEDICAL DIRECTOR
Hospis Malaysia is pleased to announce the
appointment of Dr Sylvia McCarthy as its new Medical
Director. Dr Sylvia takes over from Dr Ednin Hamzah,
who has held the post as well as that of Chief Executive
Officer (CEO) for the past 19 years. Dr Ednin will
continue on as the organisations CEO.
Dr Sylvia joined Hospis Malaysia in 2003 and
subsequently was appointed Deputy Medical Director.
Together with Dr Ednin, they have worked tirelessly
to develop and enhance the clinical services of Hospis
Malaysia, steering the organisation to deliver the
best possible quality of care to those in need in our
community. Over the years, Dr Sylvia has also worked
closely with her other colleagues to advocate for the
imposition of minimum standards in the provision of
palliative care in the country and has helped develop
Hospis Malaysia to become not just a key service
provider, but also a major education and training centre
for medical professionals in the area of palliative care.
COUNCIL MEMBERS
Chairman:
Brig. Gen (Rtd.) Dato’
Richard Robless
Vice-Chairman:
Datin Kathleen Yeoh
Secretary:
Dr Michael Adaikalasamy
2
Treasurer:
Ms Fairly Yap Swee Eng
Members:
Mr James A. Menezes
Tan Sri Lim Leong Seng
Dr Ednin Hamzah
Dr Azlina Abdul Aziz
The Council of Hospis Malaysia are confident that Dr
Sylvia will continue the good work of her predecessor
and looks forward to her further contributions to the
clinical work of the organisation.
HOSPIS MALAYSIA (223675-X)
2 Jalan 4/96, Off Jalan Sekuci,
Taman Sri Bahtera, Jalan Cheras
56100 Kuala Lumpur
Tel: (03) 9133 3936
Fax: (03) 9133 3941
E-mail: [email protected]
Website: hospismalaysia.org
HospisMY
HospisMY
PALLIATIVE CARE MALAYSIA
an initiative by Hospis Malaysia
Website: palliativecare.my
PalliativeMY
PalliativeMY
PALLIATIVE CARE NOTES
WHY IS PALLIATIVE CARE RESEARCH NEEDED?
PHOTO CREDIT: SC SHEKAR
By Dr Lim Zee Nee, palliative care doctor, Hospis Malaysia
I
n an extensive 18-month consultation which
included 1, 400 patients, carers, health and social care
professionals in the United Kingdom, top 10 research
questions* in order of priority were identified as follows:
1. What are the best ways of providing palliative care
outside of working hours to avoid crises and help
patients stay in their place of choice?
2. How can access to palliative care services be
improved for everyone regardless of where they are?
3. What are the benefits of advance care planning and
other approaches to listening to and incorporating
patients’ preferences? Who should implement this
and when?
4. What information and training do carers and
families need to provide the best care for their
loved one who is dying, including training for
giving medicines at home?
5. How can it be ensured that staffs, including
healthcare assistants, are adequately trained to
deliver palliative care, not matter where the care
is being delivered? Does increasing the number
of staff increase the quality of care provided in all
settings? To what extent does funding affect these
issues?
6. What are the best ways to determine a person’s
palliative care needs, then initiate and deliver
this care for patients with non-cancer diseases
(e.g. heart failure, chronic obstructive pulmonary
disease, dementia, AIDS, motor neurone
disease)?
7. What are the core palliative care services that
should be provided no matter what the patients’
diagnoses are?
8. What are the benefits, and best ways, of providing
care in patient’s home and how can home care
be maintained as long as possible? Does good
coordination of services affect this?
9. What are the best ways to make sure there is
continuity for patients at the end of life, in terms
of the staff that they have contact with, and does
this improve quality of palliative care? Would
having a designated care coordinator improve this
process?
10.What are the best ways to assess and treat pain
and discomfort in people at the end of life with
communication and/or cognitive difficulties,
perhaps due to dementia, brain tumour, motor
neurone disease or head and neck cancer, for
example?
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continued from page 3
The absence of evidence-based practice in many areas
of palliative care is partly due to major challenges faced
in designing palliative care research. This includes the
fact that patients are often unwell, have multiple comorbidities, may be emotionally distressed, as well as
having cognitive impairment, which creates challenges
for informed consent. Families may be unsupportive of
participation as studies may be time consuming and
tiring. In addition, the predominance of investigatorled over pharmaceutical company-led research in
palliative care limits financing opportunities for
researchers.
Well-designed research to answer important questions
relating to issues affecting palliative care patients, their
families and caregivers is still deficient in Malaysia.
Patients may have unique palliative care needs not
addressed by research in developed countries. Hence,
how can we ensure best possible care is provided if
there is lack of evidence-based practice?
Interestingly, studies have shown that most palliative
care patients want to participate in research. The
commonest reasons for participation include altruism,
enhancement of personal value, the assertion of
persisting autonomy and the value they placed on a
commitment to optimising care by research.
There is a clear need for collaboration between
palliative care researchers, patients and families to
identify research questions that are of priority in
Malaysia. Palliative care researchers have to maximise
existing resources, leverage expertise and capability
to produce excellent, internationally competitive
research.
This will hopefully ensure standardised quality care for
palliative care patients living in Malaysia.
*Source: www.ehospice.com/uk/Default/tabid/10697/
ArticleId/13664/
December 2015, Blue
Inc. Media’s ICON
Christmas Party
Recognising the work
and support Hospis
Malaysia provides in
caring for those living
with life-limiting illnesses
and their families;
JANUARY
Hospis Malaysia is grateful for the continuous
support it receives from the individuals and
corporations that support us through the
years.
We truly believe that these organisations and
individuals recognise the important role
Hospis Malaysia performs in the community
and for that we are grateful. Thank you for
including us in your festive givings!
4
Mitraland Group’s 17th
Anniversary Annual
Dinner
Chinese Chambers
of Commerce Annual
Chinese New Year
Celebrations
FEBRUARY
Genting Malaysia Bhd
Chinese New Year
Luncheon
Hospis Malaysia was
elected to be one of
the beneficiaries of the
event.
UPCOMING EVENTS
NATIONAL PALLIATIVE CARE AWARENESS WEEK
An initiative by Hospis Malaysia, in conjunction with its 25th year anniversary
By Rini Vella, Advocacy & Media, Hospis Malaysia
Most Malaysians are unaware of the
importance of palliative care and
how they can benefit from it. ‘How
can one ask about something one
didn’t even know existed?’
THE INAUGURAL NATIONAL
PALLIATIVE CARE AWARENESS
WEEK
Concerned about the need to raise
awareness of palliative care in the
country, in 2014, Hospis Malaysia
introduced an identity for palliative
care, in the form of a symbol. In
April 2014, Hospis Malaysia held
its first palliative care awareness
campaign displaying the symbol
and testimonies from patients for
the public to better understand
how palliative care can make a
difference.
In 2016, Hospis Malaysia aims to
step up its awareness campaign.
This April, Hospis Malaysia will
launch the inaugural ‘National
Palliative Care Week’ in conjunction
with its 25th year anniversary; the
week aims to raise the profile of
palliative care nationwide through
an exhibition. This year’s photo
exhibition offers a glimpse of the
work that we do. Our campaign
will address why there is a national
need to improve standards of
care provision and highlight our
increased emphasis on training of
palliative care practitioners.
‘NATIONAL NEEDS ASSESSMENT OF
PALLIATIVE CARE’ STUDY RESULTS:
Although palliative care has been
operating in the country since the
early 90’s; the level of awareness,
perception, integration and delivery
of palliative care in the country is
still uneven and not clearly defined.
In response to this situation, in
2015, Hospis Malaysia undertook
a study to look at the underlying
palliative care needs at a national
level and public awareness at
a community level. The aim of
the study was to look at growth
trends of demand and delivery of
palliative care services, identify
gaps and define quality standards
in palliative care services.
Organised by Hospis Malaysia and
in conjunction with its 25th year
anniversary, the launch of ‘National
Palliative Care Week’ will see the
release of the results of this study.
COME JOIN US!
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ADVOCACY
MOVING FORWARD – SERVING THE PALLIATIVE CARE NEEDS
OF THE NATION
by Wendy Loo, Fundraising & Advocacy, Hospis Malaysia
From left:
Dr Chitra Rajendran, Palliative Care
Association of Kota Kinabalu;
Dr Lee Chee Chan, paediatric palliative
care trainee;
Datuk Victor Rajasekran, Persatuan
Hospis Tawau;
Dr Ummi, palliative care trainee;
Dato’ Dr Ziaudin, Perak Palliative Care
Society;
Dato’ Seri Dr T Devaraj, Penang Hospice
Society;
Dr Ednin Hamzah (CEO), Hospis
Malaysia
Tham Su Ming (GM), Hospis Malaysia
I
n 2014, Malaysia was one of
the signatories to the groundbreaking World Health Assembly
resolution in support of palliative
care. The resolution targets to help
drive national action to reduce
barriers to the accessibility and
availability of palliative care.
In support of the resolution, and as
part of its long term vision, Hospis
Malaysia has embarked on an
initiative to work with like-minded
organisations to build a framework
on which existing services can
work cohesively to build capacity,
upgrade services and work towards
formulating national standards
for the delivery of palliative care
to the people. It also recognised
that the Malaysian palliative care
community leadership had voiced
that after more than 20 years of
existence in the country, it did not
want to still be “at its infancy”.
In February this year, we asked for
feedback from the various service
providers in the country on the
structure and types of services they
currently provide.
6
This was followed by a meeting of
the hospices to facilitate discussions
about where we are currently, and
what may be required to move
forward. Feedback has been shared
with the rest of the palliative care
community and submitted to the
national advisor on palliative care
at the Ministry of Health (MOH).
There is a recognition that much
still needs to be done. The country’s
palliative care services continues
to be fragmented with the bulk of
community services supported by
non-governmental organisations
who enjoy uneven support from
the community, and in-patient
units in MOH hospitals lacking in
trained personnel.
This year marks Hospis Malaysia’s
25th anniversary. In the last several
years we have embarked on several
projects including adopting a webbased patient management system,
as well as conducting a national
public perceptions survey on
palliative care and a needs analysis
of palliative care in Malaysia.
We have also done an audit of our
internal processes and are now
looking at both process and quality
indicators to measure how well (or
badly) we are doing. We are aware
that our stakeholders are looking
for governance and outcomes.
Our patients are concerned with
the quality of care that we provide,
and our financial supporters are
watchful over what we spend their
money on.
In 2014, a symbol was developed to
embody palliative care, and to drive
an awareness campaign which will
carry even more significance in our
25th year. We are now confident
that we have developed sufficient
expertise and experience that we
may be able to share with others.
Over the years, we have also
cultivated partnerships with other
organisations both nationally and
internationally that are friendly to
palliative care.
We are now reaching out to the rest
of country – how can we help?
EDUCATION
THE NEED FOR PALLIATIVE CARE TRAINING
by Wendy Loo, Fundraising & Advocacy, Hospis Malaysia
C
urrent healthcare systems
around the world have often
been criticised for focusing
on curing a disease rather than
treating the patient. Palliative care
is an approach to medicine that
manages the patient’s pain and the
many physical and psychological
symptoms associated with the
illness. The increase in demand for
palliative care remains a challenge,
particularly as awareness and
understanding are limited.
In Malaysia, ‘most medical schools
do not offer compulsory courses in
palliative care. There are only seven
certified palliative care experts,
with the bulk of palliative care
services delivered by charitable
organisations, with support from
volunteers who receive minimal
training.’
So how can the best possible
care be provided to patients with
life-limiting illnesses or minimal
standards of care adhered to if the
majority of palliative care workers
have minimal training?
To address this, Hospis Malaysia
has in the last 10 years built a
comprehensive teaching and
training faculty with a mission to
develop the much-needed human
capital to meet the needs of the
country.
Part of this is the series of seven core
workshops conducted annually in
collaboration with the Asia Pacific
Hospice and Palliative Care Network
(APHN). Each workshop provides
healthcare professionals with
training in a particular palliative care
area – nursing care, communication,
pain and symptom management,
suffering and hope, grief and
bereavement care, and palliative
care for children. Being able to
deliver appropriate and timely
PARTICIPANTS COMMENTS:
“The workshops have a lot of
practical information that is
useful, and that can be applied
when I return to the hospital. The
information shared is concise and
practical.” Look Mei Ling, internal
medicine doctor, Hospital
Sultanah Nora Ismail, Batu Pahat
“Attending these workshops is
a good way to review and keep
updated with the latest practices.”
Maria Zi, nursing practitioner
information, encouraging hope,
acknowledging suffering, while
ensuring the grief and bereavement
processes are occurring are crucial
skills in improving the patients’
quality of life.
“The goals of palliative care are
to relieve suffering and improve
the quality of life, not only of
the patient, but also their family
members,” said Dr Sylvia McCarthy,
Medical Director of Hospis
Malaysia. “Pain is unavoidable in
many patients, but we can look to
treat and reduce the level of pain,
and address the numerous and
other trivial symptoms associated
with their disease.”
These workshops provide
up -to - date k nowledge, and
evidence-based best practices
via a combination of lectures,
group work and case studies to
maximise and internalise learning.
Participants also bring up and
discuss common topics and
difficulties faced in their work
setting, whether in a hospital or in
the community.
Due to the evolving landscape
in healthcare, Hospis Malaysia
recognises the need to complement
its core training programme
with specialised workshops. One
of these is the ‘Clinical Ethics in
Palliative Care’, which discusses the
legal and ethical issues surrounding
palliative care and end-of-life care.
In 2015, it held the nation’s first
‘Train the Teachers in Palliative
Care’ workshop focussing on ways
palliative care specialists could
effectively deliver knowledge and
skills to their students.
Members of Hospis Malaysia’s
teaching faculty include specialists
in their respective areas from
Australia, New Zealand, South Africa,
UK, India, Singapore and Hong
Kong. To find out more about these
workshops or to register for them,
please visit hospismalaysia.org
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EDUCATION
HOSPIS MALAYSIA’S PALLIATIVE CARE NURSE EMILY YAP JOINS TEACHING
FACULTY FOR LIEN COLLABORATIVE PROGRAMME IN SRI LANKA
by Rini Vella, Advocacy & Media, Hospis Malaysia
‘Train the Trainers’ Sri
Lanka teaching faculty and
participants
Sri Lanka Collaborative
Programme Faculty:
Prof. Ghauri Aggarwal
(Programme lead);
Chairperson of APHN A.
Prof Cynthia Goh; Emily Yap
(Malaysia, palliative nurse);
Dr Allyn Hum (Singapore),
Dr Shirlynn Ho (Singapore),
Mr Joshua Cohen (Aus, nurse
clinician), Mr Weng Wai Yau
(Lien Collaborative Project
Manager)
CULTIVATING LEADERS IN PALLIATIVE CARE
Hospis Malaysia formed 25 years ago to address a
common growing concern for the suffering of people
living with life-limiting illnesses in the community.
Despite operating in an environment where service
provision, delivery and clinical outcomes in palliative
care remain largely unregulated; the organisation
uncompromisingly abides by international guidelines in
the implementation of its services.
Hospis Malaysia actively supports the overall
development of palliative care globally, with a unified
aim of achieving universal access to palliative care
into all countries healthcare systems. As such, the
multidisciplinary medical team at Hospis Malaysia are
constantly exposed and encouraged to teach their
evidence-based skills through various training and
educational channels.
“It is not enough for our nurses and doctors to be able to
provide palliative care. They need to be able to teach it,
model it and be leaders in their respective areas” says Dr
Ednin Hamzah, CEO of Hospis Malaysia.
LEADERSHIP IN NURSING
Carrying with her almost a decade of experience
in community palliative nursing, Hospis Malaysia’s
palliative care Nurse Emily Yap recently joined the
teaching faculty of a ‘Training of Trainers’ initiative in Sri
Lanka led by the Lien Collaborative for Palliative Care.
Over six modules, the three year programme aims to
8
establish a multidisciplinary team of leaders within Sri
Lanka to champion the development of palliative care
services.
“Emily has come into the fourth module of the Sri
Lanka Collaborative programme in a very good solid
way” says Associate Professor Ghauri Aggarwal, Head of
palliative care; Concord Hospital, Sydney and country
lead for the programme. “She brought her community
experience to the programme and her involvement
with paediatric palliative care, an aspect that we had
not covered previously. She very quickly developed a
good rapport with the nurses there. This is important
in the ‘empowerment’ that is part of our role for the
nurses in Sri Lanka.”
DEMONSTRATING KNOWLEDGE AND COMPETENCE
One of Emily’s teaching sessions included clinical
bedside teachings, a session that demands an
experienced practitioner. “I observed that only routine
clinical assessments were conducted; there was little
attention paid to the patient’s psychosocial well-being.
It’s so important to ask something as basic as, ‘how
are you today?” says Nurse Emily. “Such sessions are
extremely valuable in palliative care to teach practical
procedures and communication skills”, she stresses.
Reflecting on a teaching session on how to approach a
dying child patient, Nurse Emily pointed out the need
to be aware of making assumptions when conducting
clinical assessments. “We need to clarify and
continued from page 8
communicate with the individual,
especially children,” Emily points
out. “Some nurses confided that
they did not know what to say
to a dying child and were afraid
to approach the matter. This is
common; we are not really taught
this in nursing or medical schools.
Sometimes simply by asking the
child how they feel or finding out
their interests could offer a deep
understanding about the child and
their wishes. Communication is
vital” Emily advised.
The Lien Collaborative Programme: Codeveloped by the Asia Pacific Hospice
Palliative Care Network (APHN) and funded
by the Lien Foundation.
On her experience as a mentor in
Sri Lanka, Emily noted: “This was a
two-way learning experience for
me, I am now aware of the cultural,
language and economic barriers
in the country and how nursing is
practiced based on those barriers.”
With the support of the Sri Lankan Ministry
of Health and Sri Lanka National Cancer
Institute (in Sri Lanka). The programme
is designed to strengthen palliative care
leadership and capacity. Similar programmes
have effectively been carried out in Myanmar
and Bangladesh.
ADVOCACY
SUSTAINABLE DEVELOPMENT GOALS
by Rini Vella, Advocacy & Media, Hospis Malaysia
Throughout history, health has
been a primary concern for human
beings. Good health and wellbeing is the essential ingredient to
human happiness. ‘Within societies,
good health makes an important
contribution to economic progress
as healthy societies tend to live
longer, have a better quality of life
and are more productive’.
If you or a loved one were seriously
ill, would you want to receive care
that is affordable, effective and of
sufficient quality?
UNIVERSAL HEALTH COVERAGE
Consequently, the concept of
‘Universal Health Coverage’ (UHC)
or ‘healthcare for all’ has been
a popular objective in many
countries globally. The World
Health Organisation defines UHC as
‘ensuring that all people can utilise
the health promotion, prevention
and treatment, rehabilitation and
palliative care health services that
they need, of sufficient quality to
be effective; while also ensuring
that the use of these services does
not expose the user to financial
hardship.’
SUSTAINABLE DEVELOPMENT
GOALS
I n September 2015, world
leaders adopted the Sustainable
Development Agenda which
includes a set of 17 Sustainable
Development Goals (SDGs), teamed
with their accompanying targets
aims at building a better world by
2030, by putting an end to poverty,
fight inequality and injustice, and
tackle climate change.
❝
If you or a loved
one were seriously
ill, would you want
to receive care that is
affordable, effective and
of sufficient quality?
❞
9
continued from page 9
❝
Palliative care is a fundamental
aspect of achieving Universal Health
Coverage (UHC), as well as in achieving
other targets under Global Goal 3.
Universal Health Coverage (UHC)
has been identified as part of the
Global Goals; however more action
is needed to achieve UHC.
GLOBAL GOAL 3: GOOD HEALTH &
WELLBEING
Global Goal #3 focuses on ‘good
health and well-being’ and aims to
ensure healthy lives and promote
well-being for all, at all ages. A
target of this goal positions that
‘By 2030, reduce by one third
premature mortality from noncommunicable diseases through
prevention and treatment and
promote mental health and wellbeing’.
How can the inclusion of palliative
care contribute towards achieving
this target?
On why quality healthcare should
be available for all: ‘Health is a
human right. No one should go
bankrupt when they get sick. 17%
of people in low middle-income
groups are pushed or pushed
further into poverty by health
spending. Achieving UHC reduces
poverty and fuels economic
growth’, explains The Global
Coalition for UHC.
Palliative care is a fundamental
aspect of achieving Universal
Health Coverage (UHC), as well as
in achieving other targets under
Global Goal 3.
The recently published ‘Palliative
Care and the Global Goal for Health
Report’ identifies challenges to a
strong focus on palliative care as
part of the Global Goals: ‘These
include a lack of political will and a
global civic movement to promote
it, funding challenges, lack of an
indicator for monitoring palliative
❞
care, the need for integration
into primary health systems, and
workforce education gaps’.
The report further recommends:
‘governments must create an
environment that welcomes citizen
advocacy, people must demand
a voice in the local, national and
global discussions and empower
themselves to work towards
rightful access to palliative care as
part of the Global Goal for Health.’
The Global Goal for Health
(and its accompanying targets)
advocates for a focus on improving
palliative care for people with lifethreatening and life-limiting illness
globally. Each country defines its
own path to pave in achieving
UHC and the Global Goal for
Health. In defining this path, each
will have to consider many factors
such as its own state of politics,
its existing health and financing
structures, to its engagement with
various stakeholders to devise
a sustainable strategy towards
providing affordable, quality health
services for its people.
In 2014, Malaysia helped sponsor
a resolution at the World Health
Assembly in support of palliative
care. Challenges to a strong focus
on palliative care as part of the
Global Goals have been identified.
What steps are we taking to lead
our country onto a sustainable path
to achieve Global Goal #3?
10
FEATURE
DON'T TELL PATIENTS WHAT THEY COULD BE DOING TO CURE THEMSELVES
Rephrased with permission from an article written by Steven W Thrasher, published in theguardian.com on 26th
March 2016
D
on’t tell someone with a lifelimiting illness that if they’d
just drink juice (or take
vitamins, or pray or have a “positive
attitude”) that they could cure
themselves.
My sister lived with a rare type
of sarcoma tissue cancer for 15
years. Since she’s been gone, I’ve
been able to understand that my
sister wasn’t alone in a particular
burden she bore. I’ve been hearing
from friends with cancer and other
serious illnesses that they are
overwhelmed when concerned
people toss suggestions at them
for homeopathic remedies they
“should” be doing.
Over the years, it was painful for
me to see people tell my sister (and
me) that she could just cure herself
if she really wanted to. Didn’t she
know that if she just drank lemon
juice every day she could wipe out
her cancer cells? That if she were
only willing to take vitamins, or do
yoga or look on the bright side of
things, her illness would go away?
Let’s put aside for a moment that
none of these claims have been
validated by peer-reviewed science –
and that none of them are true. Let’s
instead confront the three reasons
I think it’s an act of violence every
time someone suggests a simplistic,
unproven and fantastic cure for
another’s life-limiting disease:
First, it’s condescending. If lemon
juice really cured cancer, don’t you
think we’d all be dancing around
citrus trees? More importantly,
when someone has had cancer
or serious illnesses for months or
years – maybe living through hours
of doctor appointments, days in
hospitals and months in bed –
facing mortality, or telling them
they’ve missed a simplistic way
they could have avoided their fate,
further isolates and shuns them.
don’t you think they’ve had time to
consider every possible option with
the seriousness their own mortality
deserves?
Second, it could be argued that
people giving advice are just trying
to “do something” and kindly offer
help. But I reject this: if you want to
do something to help someone in
distress, as George Carlin famously
riffed, unplug their clogged toilet
or paint the garage. Don’t tell a
sick or injured person what they
should do, because it’s a sneaky
and harmful way of dealing with
your own fear of death. Finally,
giving advice to people with
cancer blames the sick person for
your discomfort with their reality
and shifts any accountability
you feel back on to them. As the
authors Barbara Ehrenreich and
Sarah Schulman have shown, we
have ethical responsibilities to the
vulnerable in our communities
– and we find excuses to avoid
them. Having cancer or caring for
someone with it understandably
causes fear, anxiety and depression.
Expecting someone to have a
Positive Attitude™ when they are
As anthropologist S Lochlain Jain
wrote in Malignant: How Cancer
Becomes Us, “the huge and
punishing self-help industry preys
on fear and adds guilt to the mix. As
one woman with metastatic colon
cancer said on a retreat I attended,
‘Maybe I haven’t laughed enough.’
Talking at someone with cancer
about what they should do, rather
than being with them in a state
of disarray with no easy answers,
is not you helping them. It is you
unfairly shaming them for having
failed at self-help, which isn’t even
a thing.
It is hard to be with people in
grief. It is hard to be with people
who are facing death, or with their
caregivers. The next time you are,
don’t give them stupid advice –
they aren’t stupid. Trust they’ve
given more thought to their course
of treatment than you did listening
to that public radio story. Trust
yourself to just be with them in the
unknown.
Trust yourself to love them in the
condition they’re in, instead of
ignorantly and egotistically giving
useless advice that won’t ultimately
change their prognosis.
One of the last and most frightening
lessons I learned with my sister in
her final days was the importance
of being with another when there
is nothing to say or do.
It is terrifying; to just be with a loved
one and to admit you’re powerless
to stop their death. But it can be the
most powerful, quiet and loving
gift you can give each other.
11
2016
UPCOMING EVENTS
APRIL
16th -17th
Ethics in palliative care
Workshop
20th -24th
National Palliative Care
Awareness Week
SEPTEMBER
23rd -25th
Paediatric palliative
care Workshop
APRIL
MAY
14th
Treasure Hunt
28th -29th
Communication Skills
Workshop
OCTOBER
14th
Hospis Malaysia 25th
Anniversary Gala
Dinner
JULY
AUGUST
13th-17th
Palliative Care
Awareness Roadshow
@ Bangsar Shopping
Centre (BSC)
7th
Standard Chartered KL
Marathon (SCKLM)
NOVEMBER
DECEMBER
4th-6th
Pain & Symptom
Management
Workshop
19th-21st
Suffering & Hope
Workshop
4th
Annual Charity Bazaar
@ WIP, BSC
17th-18th
Grief & Bereavement
Workshop
CAREGIVERS WORKSHOPS 2016
Held once a month, the caregivers’ workshops are
designed to introduce the caregiver to some basic
caregiving and nursing skills needed to help them
better manage the symptoms and effects of a disease
at home.
Visit hospismalaysia.org for the schedule.
The recent ‘Stoma and Fistula’ Caregivers Workshop aims to
help improve caregivers’ skills and confidence in stoma and
fistula management at home
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